The pitiful challenges even a Good Doctor faces….ignorance, stupidity, resistance. Read this!

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As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy. So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces! The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote: PRECAUTIONS “Patients with underlying cardiovascular disease—Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.” Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you?? Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it! Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal. STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER

Have you registered for the Counterexamples to T4-only? So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong. All you have to do is answer 3 very short questions. http://www.tpa-uk.org.uk/register_of_counterexamples.php

Janie, my doctor has been getting a lot of flack from the insurance companies, too. They question him as to why all the tests he is giving me, and where is the rationale behind it. He got a four-page letter (didn’t show me, though) where they were questioning his practice for ordering unnecessary testing (reverse T3, Free Ts, ferritin/iron panel, etc.). The insurance companies also tie the doctors hands when it comes to the meds dosing and refills. That’s why he has me coming in every four weeks to be monitored with heart rates and blood pressure, etc., so that he can prove to the insurance companies that he is carefully monitoring the progress of my being on T3-only. The insurance company feels that even the modest dose of 75 mcg daily is too much, and they will not fulfill his script orders for multiple refills unless he is carefully monitoring my progress. Doctors really get a raw end of the deal when they try to do the right thing. Many of us patients don’t realize the kind of pressure they are under in going against the grain. He cautioned me to expect a letter from my insurance company in the near future about the thorough testing I have had done, and that they may ask me to pay out of pocket for many of them. He explained that he tried to talk to them about the importance of these tests (not sure if he cited your book, but he has read it!), but they still felt they were not an integral part of routine testing, and that they may not cover all the cost of the tests performed. He told me with great concern and was apologetic. I have not yet received any such letter. But there ARE the good doctors trying to fight against many adversities to get us the health we so want and need. My doctor is becoming very unpopular within certain circles, but he just trudges on in spite of the back-lashing. So it is not always the doctors that hold us back. I am glad he felt that he could share these things with me.

I can barely read any of these things – it makes me so wild. I have yet to understand why so called intelligent people can’t see what is going on with thyroid? It baffles me – it seems so black and white and so basic.

I’m also baffled by the insurance companies. Surely someone who god forbid – was well most of the time, on correct T3/T4 meds would be an ASSET to the insurance company. Imagine how much money it would save them in the long run? I know someone who needs a breast reduction but they won’t pay for it. I guess they would rather pay for years of continuing back and other problems.

I salute the doctors who are trying to deal with sheer pig ignorance. My doc in Australia is also having problems because someone thinks she shouldn’t be prescribing T3/T4. I understand the american term – going postal!

For a so called bunch of intelligent people – allopathic medicine has some very stupid people in it.

I’ve personally been a “victim” of this closed-minded type of thinking, as has a close friend. I was sick for three years — except for two short periods when I was on T3 (Cytomel) only, with no T4. Every time I added T4 back to my regimine, I got very sick with severe chronic fatigue, fibromyalgia, brain fog and more. I finally found a wonderful naturopath who was willing to read the latest research and treat me based on symptoms. She (and the MD she worked with) was fine with prescribing my Cytomel, and I became VERY WELL within a matter of WEEKS.

Three months into my treatment with her, the new MD at the medical practice said he wasn’t willing to write the prescription unless I “signed a waiver” of liability saying they weren’t responsible if I died while on T3! Obviously they were misinformed and behind the times on thyroid treatment.

Then, the new MD said he wouldn’t treat me with T3 unless I ran all thyroid lab tests every four weeks. Given that I’m unemployed at the moment, I told him that I couldn’t afford monthly lab tests – especailly at the “premium” price that their practice charged for labs. The naturopath’s hands were tied, because naturopaths can’t write prescriptions in the State of Georgia.

I recently ordered a three-month supply of Cynomel from a source in Mexico. Cost? $60. Cost for labs at this doctor’s office? Nearly $200 — plus the cost of the Cytomel prescription with no insurance coverage, $287 per month. I’m treating based on my symptoms – and I know it will be very clear if I start having hyper symptoms, at which time I’ll simply reduce my dose of T3. Given the past bad behavior of this doc, even if I did submit to the monthly lab tests, he would wait weeks before renewing my prescription. If I hadn’t had a stash of Cynomel from a previous year, I would have gone with no thyroid medication – and this doc doesn’t care.

It’s an embarrassment and a shame that American thyroid patients can’t get the care they need except from a few rare doctors, and that we have to go to a different country to get our medication. I know for sure that if the ability to get my meds was suddenly stopped, I’d have to move out of the U.S. just to stay well.

I WILL NOT go back to being sick all the time just to satisfy the doctors’ need to have happy lab results in spite of my symptoms.

I just discovered this site. Wow. Eight months ago I went to a HCG prescribing doctor who’s sideline is treating hormone issues so his patients with thyroid problems etc will actually get results. He tested my Free T3 and found it to be at rock bottom of the so called ‘normal’ range. He put me on 1.25 grains of a naturally compounded sustained release thyroid med, and got my Free T3 up to 3.9, which he said was a “good fat-burning level.” On his program I lost 16 lbs by starving myself half to death and injecting HCG in the fat of my abdomen for 6 weeks, but I ran out of money, so the doc had to cut me loose. So I went to my PCP and asked him to refill the 1.25 grains. He did the standard useless thyroid labs on me but I also insisted that he do a Free T3. Turns out my level had fallen from 3.9 to 3.2, even with the 1.25 grains. Anyway the nurse called me to tell me my thyroid tests were “fine”. Free T3 ref range is after all 2.0 to 4.4, and I checked in at 3.2. So what’s the problem? I couldn’t walk up a flight of stairs with two small bags of groceries, that’s what. I told the nurse, “please remind Dr. So-N-So that I need him to write me an Rx for 1.25 grains of Thyroid to maintain.” She talked to the doc again and they called in Armour 120mg since there isn’t a 125mg dose. HA! Haha! That translated into TWO GRAINS of thyroid instead of 1.25…and GUESS what the hell happened next?? Not only can I RUN up the stairs but I can carry FOUR bags of groceries in each hand!!! This is who I was 12 years ago before for reasons unknown I gained 40 lbs overnight and lost handfulls of hair. Are ya with me? It’s a doggone miracle, and all by mistake. Wow.

There seems to be a concern that it is insurance and pharmaceutical greed that is driving the T4 only trend. True natural thyroid is cheaper, it is one part of the pig that isn’t in hot dogs ;-). I wonder what the other driving factors are of keeping people on T4 only. I would pay a lot more $ for natural thyroid than I would for synthetic? Wouldn’t you? The pharmaceutical companies could actually make a lot more money. And the insurance companies could actually be saving money right now by pushing for the cheaper natural thyroid. Just something to think about. I wonder if diabetics also have difficulty getting porcine insulin prescribed instead of synthetic insulin grown grown with bacteria?
Peace V

Pegging onto what Rachel said, I just switched from dessicated thyroid to Cytomel to address a Reverse T3 problem. I have good insurance, but I am still paying, literally, ten times as much for the Cytomel than I am the NP Acella. You would think insurance companies would get smart about this and encourage more use of NTH.

My insurance company won’t pay for NDT because they say it is not FDA approved. I’ve been told that none of them will.

I’m on Medicare, but have to have insurance to pay for drugs. Since this is the only drug I take on a regular basis, and the premium for this insurance is $97 per month, I find this really insulting.

This is the time of year when Medicare participants can change the drug care insurer they use. I was sent a list of all the insurers that handle this kind of insurance, so I assume that others were, too.

I plan to call each company, ask for a supervisor and state that if they will cover Armor Thyroid, I will switch to their company. I don’t think that will do very much, but if all of us do it, it might make a difference.

Remember, the only reason that NDT is NOT FDA approved is because they want the manufacturers to submit an application for a drug study, which will give the FDA an enormous amount of money and is what the FDA uses to make their payroll. Once the huge amount of money for the application is in, the FDA doesn’t seem to care, and approves almost everything.

In other words, it’s plain and simple extortion by the FDA!

But if enough of us call, the insurers might change their tune! Call NOW, because the last day to change is coming up soon. I think it’s the 7th of December, but I couldn’t swear to it.

I invite your attention to the following quote:
“FIRST,the patient, SECOND,the patient, THIRD, the patient, FOURTH, the patient, FIFTH, the patient, and then maybe comes science. We FIRST do everything for the patient…..” Bela Schick (1877-1967) renowned Hungarian pediatrician and bacteriologist. Taken from Strauss MB Fimiliar Medical Quotations. Boston, Mass: Little, Brown and Company; 1968:374

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Thyroid Madness Definition according to many reported patient experiences:

Treating most hypothyroid patients with T4-only meds; offering no options.

Dosing solely by the TSH and the total T4, or using the outdated "Thyroid Panel".

Prescribing anti-depressants in lieu of evaluating and treating the free T3.

Doctors will have more lives to answer for in the next world than even we generals. ~Napoleon Bonaparte Is it possible that what was already awful....can be MORE awful?? Apparently so in the UK (United Kingdom). If…